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Drug Holiday…

No it has nothing to do with a vacation in Central America or any other type of vacation that involves recreational drug use.  For an MS patient a drug holiday is a time when they are taken off all disease modifying drugs.  For my husband his current drug holiday started in April when he stopped taking Tysabri.  The doctor had a wait and see attitude about it, thinking that it is quite likely that Pete is secondary progressive at this time and the drugs may not really be helping him anymore.

I have been keeping a close eye on him since that time for changes in physical strength and cognition.  Physically he has good and bad days but had not been losing significantly until this past weekend.  The weather has been very hot and humid and he was slowing down noticeably.  I attributed this to the weather, heat does sap his energy and strength and to add to this we drove 3 hours stayed in a hotel and spent all day Saturday at an amusement park riding roller coasters.  He should be tired.

But he has been having another symptom, he seems out of it, slow to speak and respond to questions. Sometimes he doesn’t respond at all, as if in the effort to formulate a response he grew too tired to bother to spit it out.  His quick wit was gone and also his irritability was gone.  I know that might seem like a blessing BUT it is not normal for him to be this mellow.

I emailed his doctor on Sunday afternoon filling him in on the behavior changes and asking what he wanted to do.  He wants us to come in tomorrow to see him.  I am hoping he has something in mind that can help stop whatever is happening, he had mentioned IV steroids as a possibility.  Pete hates those BUT they do help sometimes.

Wish us luck.  I can’t believe I am saying this BUT I am hoping this quiet mellow Pete is not the new normal.

 
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Posted by on September 8, 2014 in Cognitive Loss, Daily Living

 

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Introducing…

I have had a blog for about 7 years, in the beginning I posted a lot, it was random and silly and mixed in with many posts about having a husband with MS.  It was an outlet for me, sometimes I whined, other times I really spoke from the heart.

I intend for this blog to be much more focused.  My topics will be MS (multiple sclerosis) and the many ways it can affect a life such as physical disability, cognitive dysfunction, dementia, lots of fun topics all told from my personal perspective.  As well I may touch on veterans issues as my husband is service connected and covered by the Veterans Administration. The ongoing struggle for benefits from the VA will be a fun topic to tackle.  I will also bring forward some of my past posts that are relevant.

So if you are reading this, thank you.  I hope to help other spouses of MS patients as well as spouses of disabled veterans who may be seeking benefits, and hopefully anyone who has ever had to take care of or advocate for someone who they loved who could not do it themselves will find something here.

Hang on it’s bound to be a wild ride.

 
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Posted by on August 7, 2014 in Purpose

 

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